Healthcare and Bioethics

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Tuesday, August 24, 2010

There are some e-mails making the rounds that assert that the recent healthcare reform law so greatly curtails the coverage of medical procedures for senior citizens that it has essentially created "senior death warrants." This is entirely untrue. I can only assume that this misinformation was created and distributed by those who were and are opposed to the reform because it might cut into their profits (health insurance companies and their lobbyists come to mind). It is dangerous misinformation, because it leads to needless fear, panic, and anger among seniors who have received these e-mails.

Healthcare reform was initiated in order to make medical care more accessible and more affordable to more Americans. As enacted, the recent healthcare legislation is merely a small and necessary first step toward achieving what this country needs, which is more accessible and more affordable medical care for all Americans. There is no reason why we should not be able to achieve this, here in this land of liberty and justice for all, since we have so many intelligent, creative, and hard-working people striving to develop the best healthcare delivery system in the world.

Stay tuned for more specific discussions on the recent healthcare reforms.

Tuesday, August 17, 2010

Officials at UC Berkeley, in connection with an orientation and year-long program on "personalized medicine," sent letters and DNA test kits to 5,000+ incoming freshmen and transfer students. It asked students to return a saliva sample in the test kit, so that their DNA could be tested for the presence of genes involved in the processing of three substances: alcohol, folic acid (vitamin B9), and lactose. The students were also asked to sign a consent form authorizing the testing, and were advised that they would be given their test results, but their DNA information would otherwise remain private.

The science professors and administrators at Berkeley were completely surprised by the maelstrom of questions and criticism that erupted in response to the DNA testing plan. Bioethics experts, legislators, and the news media began asking questions as soon as word of the DNA test kits got out. Several concerns about this DNA testing came immediately to the forefront:

Was this testing for medical purposes, or simply for "educational and research purposes" as stated by the university?

Had the students been fully informed of their right to refuse the testing, and of any risks involved in the testing?

Would the genetic information be protected sufficiently so as to keep it from being accessible by outside parties?

The California State Assembly's Committee on Higher Education held hearings to question Berkeley officials about the DNA testing, and specifically about plans to safeguard the privacy of student genetic information. Then the state's Dept of Public Health held hearings about the testing program, and concluded that, since students are to be informed of their individual test results, the testing is not merely for educational and research purposes but is more akin to testing done for medical purposes. Therefore, the testing is subject to state laws and regulations assuring accuracy, and may be done only by appropriately licensed labs and not by university technicians. Since this would make the testing prohibitively expensive for the university, it has decided not to provide individual test results to students, and to use only general information about the results in orientation seminars. Also, as was originally planned, Berkeley will destroy all DNA samples after the testing is done, so that students' genetic information will be kept private.

Berkeley's science professors and administrators have made noises about "academic freedom" and government interference with their rights as educators. The individual rights of the students were at issue here, too, but those in charge of the DNA testing program failed to give adequate thought to those rights. Perhaps that is because they were acting with good intent, in pursuit of an interesting educational opportunity for their students. But it might also be because some scientists act without giving due attention -- or any attention -- to ethical questions. It is not that they are unethical people, but that they are focused on the experiment, the quest, and not the question of whether the experiment is one we should undertake in the first place.

There are many capable ethics and bioethics experts at Berkeley who could have provided advice to their colleagues before the DNA testing program was launched. Clearly, those experts were not involved in the planning process, if they were consulted at all. And while Berkeley's Committee for Protection of Human Subjects reviewed the proposal for the testing program and approved it as posing minimal risk to students, I wonder whether that committee includes a member whose focus is ethics. It certainly should include such a member, and I can only hope that the university will see to that, and will ensure inclusion of ethics experts in the planning of any educational programs that include genetic or other health-related testing.

Saturday, August 14, 2010

What is "bioethics"? It may be defined broadly as the field of study and practice dedicated to discerning and doing what is right (morally acceptable) in circumstances affecting the life, health or well-being of persons, potential persons (such as frozen embryos), animals, and the living environment surrounding us on planet Earth.

Healthcare bioethics is concerned with the life, health and well-being of persons and potential persons. This field covers a wide range of topics and situations, including: in vitro fertilization, stem cell research, genetic testing, access to medical care, privacy of medical records, end-of-life treatment, and much more.

The basic principles of bioethics are the following:

Nonmaleficence ("Do no harm") -- Medical practitioners must refrain from doing anything that could worsen a patient's condition.

Beneficence ("Do good") -- Medical practitioners must take all actions necessary and reasonable to improve the patient's condition. This includes providing the patient with adequate relief from pain and suffering ("palliative care").

Autonomy -- A patient is an autonomous individual, which means she has the right and authority to refuse medical treatment, or to choose from among treatment alternatives that have been fully explained to her. If a patient is not conscious or has lost the mental capacity to make decisions for herself, we can still adhere to this principle by acting upon any advance directive she has signed, or by looking to the person she has appointed as attorney-in-fact or healthcare proxy to decide for her.

Justice -- This principle of bioethics is concerned with the fairness of the ways in which medical care is provided, and in which medical research is conducted. Should all peoples in society have equal access to equally good medical care? If we want everyone to have such access, how do we achieve that? If pharmaceutical companies are enrolling certain populations in research trials of new medications without fully informing them of the potential risks, how do we stop that practice and prevent it from reoccurring? These questions are among the multitude of questions the justice principle requires us to examine.

Clinical ethicists are often called upon for assistance in the hospital setting. Sometimes, members of a medical team may disagree about the appropriate treatment for a patient. An ethicist can help the team members explore all the options and the ethical ramifications of those options, and guide them toward reaching a resolution. At other times, a patient's family members may disagree about whether their loved one, now unconscious and connected to a respirator and feeding tube, would want to discontinue treatment. An ethicist can help the family re-examine discussions they had with the patient in the past and talk to them about the ethical principles relating to their situation, in order to help them come to an understanding of what the patient would likely decide for herself and to provide ethical support for the decision they must reach. An ethicist never makes the decision for others, but merely informs, guides and advises.

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I am a clinical ethicist with in-hospital experience in ethics consultations and review of applications for clinical research trials. In addition, I have taught new medical staff and graduate students about bioethics in general and research ethics in particular. Prior to embarking on my bioethics career, I practiced law for 16 years and then taught law students for 8 years.